Sunday, May 12, 2013

Not Just Any Mother's Day

I am truly blessed.  I can't believe this is my 21st year to be a mom.  I have had many ups and downs, as many of us all do.  But through it all I am blessed beyond my wildest dreams. As I look back over the last 5 years I have learned the most about myself than at any other time in my life.  I actually thought the biggest test in my life was getting through an abusive 1st marriage. I was so wrong. God had other plans for me. I am also sure the learning curve will continue during this life of mine.
In the last month we have been trying to find the right ADHD medicines for Beckett.  We had him on 5 mg of Focaline for one week.  It turned Beckett into an aggressive, irritated and unsettled little boy, on top of totally eliminating his appetite.  We now have changed it to Adderall XR, but I haven't been able to get his prescription yet for it. I am hoping to begin it next week. 
This week has been an amazing week for me.  I received two emails from doctors who know more about SYNGAP1 than anyone I have found in the world.  I wrote an email to Dr. Gavin Rumbaugh from Scripts Labs in Florida 6 months ago.  I was so glad to hear from him.  He then gave me the name of Jacques L. Michaud, MD.  He is the doctor who developed to test for SYNGAP1.  He is now trying to make an accurate descriptive definition for SYNGAP1.  To my surprise, he emailed me back within about 10 minutes and ask me to have a phone conversation about Beckett.  I am so excited that I have been able to get the attention of a published scientist who is interested in my sons condition.  I am beginning to see doors open and hoping to be a part of something that will bring hope to others and my son.